Scrambled in the City

I’m walking down the street of a major American metropolis, bagel in hand, rushing to find a park bench so I can log in to Zoom. I look down at my feet, pause, and whip out my phone.

Perfect. This will do. *shutter click*

Leave it to a patch of dingy city sidewalk to embody my feelings of living with an inflamed brain.

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Relapsing… again. Autoimmune encephalitis round #3: Let’s go 🥊🥊🥊

Autoimmune encephalitis (AE) is a nightmare.

Internists don’t want to touch it. Psychiatrists look on with sympathy. And most neurologists would rather not acknowledge it at all, unless scores of paraclinical investigations are screaming in their face.

So you might begin to imagine how dejecting it feels to be the one actually living with this illness.

Learning to Bloom Where You’re Planted | Monthly Resilience Report: June 2021 (Last One)

Two years ago this month, I was hospitalized for the first time. I was diagnosed with seronegative autoimmune encephalitis (AE). And I started 5 months of immunotherapy, roughly 5 years after my illness first began.

By November 2019, I thought the battle was won: I seemingly had all the answers to solve my medical mystery, which had been open since 2014. It was clear by that point that standard AE treatments had worked wonders to bring me back to my original baseline of good health and cognitive functioning. Sure, I knew relapsing was a possibility; but were that to happen, I figured that healing again would be as simple as resuming Rituxan.

Wobble here, wobble there | Monthly Resilience Report: April 2021

Each month usually has a general direction or theme that I can speak to; not so much April, however. It’s been a month of everything: healing, setback, haze, peace, struggle, stress, and growth. I’m not making a beeline from A to B, that’s for sure.

Despite the detours and the weird place I find myself today, I do have faith that I’m slowly making it through to where I want to be.

This is what it took to lift me out of an autoimmune encephalitis relapse

The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.

Is it safe to fly? Will I regret this later?

Bumps in the Road | Monthly Resilience Report: March 2021

All things considered, I reaaaaaally don’t have much to complain about.

That’s one major advantage of coming out the other side of a major medical issue as a young adult: recover, and the magnitude of most life issues dramatically diminishes compared to how you might have perceived the same life issues had you never gotten sick at all.

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